|Our home base for screening days.|
The patients are evaluated by the surgeons (Lehnert, Spanko, Nyska, Mullens, Koshumine, Sellers, and Ip) and team physical therapist (Stacy Lerner). To be added to the surgical list means that the surgeons and PT all believe that the surgery will improve the person's quality of life and will not negatively affect any other physical functionality. Many of the surgical patients will be referred for bracing post-operatively.
Another factor is follow-up care. The patients will be in the hospital for 2-3 days before going home, during which time family members must be on hand to provide food, purchase and dispense medications, and provide support. This level of care is important on both physical and emotional levels for the patients. Some patients will not need surgery, but will see Stacy and Amy Levin at the Can Tho Children's Hospital to develop a therapy plan to help them improve.
|Exterior hallway connects |
sections of the hospital.
We spent our first two days here evaluating patients. We saw 87 patients over the two days, ranging from infants to adults in their 50s. We have identified 34 for surgery, but are having some trouble getting the equipment and staff to handle anesthesia for five or six children under the age of five, including a 10-month-old baby. Patients have come from 45km and further to see us, which sounds trivial until you remember that there is very little in the way of transportation here. You can't just hop in your car in go. Very few people have cars and although the city swarms with scooters, transportation in the outlying areas is far more limited.
Most of the deformities we see are from birth or illness rather than accident/trauma. Many patients have just adapted to their deformities and found ways to walk despite significant limb-length differences and muscular formation. Many of the same birth defects occur in the United States, but because they're corrected in infancy, we're less aware of them. Culturally children with these defects face many challenges. If they cannot walk or walk with a pronounced limp, they cannot go to school. If they have a visible defect, they may be considered marked by evil and shunned or their families keep them relatively hidden.
|Deformities can result in pain, physical challenges, |
and social judgment.
There are many cases of children and young adults with cerebral palsy (CP). CP is a broad definition, so these patients may have primarily physical issues or any range of developmental issues as well. The families are very involved as the patients are often very physically dependent on their families.
I was responsible for gathering initial intake information and entering it into our patient spreadsheet. I was initially caught off guard when the prelim diagnosis was "post-polio" defect. Then, unfortunately, it became a very common entry in my data.
Given my own involvement with and experience with the March of Dimes, it's amazing to me to see the continued prevalence of a disease that has been nearly eliminated in the U.S. and other western countries through the Salk vaccine. It's hard to look at these patients and know "this didn't have to happen." Some of the post-polio patients aren't specifically aware of polio itself. They know they had a very high fever and could no longer walk correctly as a result. Polio damages the muscles and impairs function and growth for the rest of the patient's life.
|Patient in screening with clubfoot deformation.|
The hardest situations are those in which the IEP team can do nothing to help the patient. Or know that fixing one challenge would ultimately create more problems in the long term. You can see the sad frustration from the medical team when they have to give such a diagnosis and know that with earlier treatment or different levels of medical care more could have been done far sooner to resolve or even avoid the situation entirely, as with the polio cases.
Despite their challenges, the patients are mostly positive. Some have never been far from their homes, so the city of Can Tho alone is overwhelming, let alone a cadre of Western doctors examining them. The children are so very sweet and amazed by things like pinwheels and candy, especially chocolate. It's great fun to see a child investigate the wonders of a small package of M&Ms, only to realize that those colorful little things are absolutely delicious.